Posts from the ‘Dr Appt’ Category

The appointment

I’m sitting here while Dr. R talks to Gavin. Trying to hide behind the invisible wall that excludes me from the conversation since I’m “Mom” and therefore embarrassing. This is where we are so far:

  • He has tremors that are caused by the Seroquel. They are not familial tremors like I have; I asked.
  • He’s talking about the voices now. He hears the voices through his ears. There are a lot of them. Dr. R agrees with Pattie that he is 100% hearing the voices, which makes this a form of psychosis.
  • He isn’t sleeping very well at night. He’s been waking up at midnight, 2AM, 4AM and 5AM when he just stays awake. At 5AM he begins to perform his shows.
  • The facial tics are called tardive dyscanesia. They are an independent medical thing, completely separate from everything else. They can become permanent but Gavin’s are not permanent now.
  • At this moment in time Gavin’s is diagnosed with Bipolar – Mania with Psychosis. Dr. R said that there is a spectrum (I’ve learned to hate spectrums.) of Bipolar and schizophrenia. It looks something like this (imagine it’s on a line):

BipolarBipolar w/Mania & PsychosisSchizoaffective DisorderSchizophrenia

Right now, Gavin falls on the Bipolar & Bipolar w/Mania & Psychosis side, which basically means he’s so manic that he’s had a psychotic break of sorts. Dr. R said it is impossible to diagnose Schizoaffective Disorder in a child Gavin’s age. Although it may become evident in the future that is what he in fact has. Only time will tell.

  • The anti-psychotic is making the facial tics worse and will likely continue to do so. However, it is absolutely a necessary evil now. We need to bring him out of the Manic mood that he is currently in and the only way to accomplish that goal. Once he is no longer manic and psychotic it is our hope that the Lithium (I’m getting there.) will be able to stabilize him and his moods.
  • His mouth movements – baring his teeth while he talks, stretching his lips out while he talks to expose his gums etc. are the tardive dyscanesia and not stimming behaviors with the Autism. Having the tardive dyscanesia complicate the issues as a whole because it makes choosing an anti-psychotic much more difficult. Ideally we would be able to find one that works and doesn’t cause the tardive dyscanesia since it can eventually become permanent; however, that isn’t the case and we’re forced to work with what we’ve got.
  • The wiggling of his fingers and flapping of his arms are part of the Autism. Dr. R said he has become anxious to the point of developing more stimming behaviors.
  • We are rapidly running out of antipsychotics to try, which combined with his tardive dyscanesia makes things even more difficult. In the end, if all other antipsychotics fail there is one left. It’s called Clozapine (or Clozaril) and Dr. R said it is “the Atom Bomb of antipsychotics”. The problem with Clozapine is that it is associated with agranulocytosis, which is the turning/killing off of the white blood cells. When Europe began using it they didn’t keep track of the patients white blood cell count and 14 or 15 patients died. Ever since the US approved it, it has been the most tightly controlled medication of all the medications available in the US. A patient is only given a 7 day supply at a time at first because they must have a blood draw to check their white blood cell count. Only after the pharmacy receives the results of the blood draw will they dispense the next 7 days supply. Eventually the blood draws are spaced at 2 weeks, 3 weeks and finally 4 weeks for the duration of the usage. Thankfully, Dr. R said we are not at a point where this medication is necessary.

And finally, here is the plan going forward for now:

  1. We are slowly weaning Gavin off the Depakote and eventually removing it altogether.
  2. Starting today we are increasing his Seroquel.
  3. Adding Lithium to replace the Depakote.
  4. Adding Cogentin, which is supposed to help with the facial tics.

That’s the entire appointment from start to finish. We start changing his medications around and then return to see Dr. R again next Wednesday. Here’s to hoping this works because I’d really like to avoid the Clozapine if at all possible.


The Dr. R list

Not to pop the “Emmett John said his 1st word” bubble of happiness; but Gavin and I are currently sitting in Dr. R’s waiting area, awaiting our turn to discuss his current possible psychotic break. To give you some insight as to where we current stand with Gavin and what concerns us most; here is the list of things I’m going to try and bring up in 15-20 minutes.

    Pattie believes 100% that Gavin is hearing voices.

    He’s become very, very easily agitated.

    He wakes up in the middle of the night to perform his “shows”, which are imaginary plays that he either physically acts out or plays in his head.

    He’s developing pretty bad facial ticks. When talks now he does so with his teeth bared, not clenched just bared.

    He’s started to do more stimming behaviors like finger flapping and hand waving.

    He’s hearing voices again and he frequently calls out to us to make sure we are talking to him and not “the others”.

    He’s unable to do simple tasks most of the time.

    His behavior is becoming more child-like, almost to the point of being a toddler.

    His speech and behavior are regressing again and I’m worried he might have the regressive form of Autism.

    His outbursts are becoming more aggressive – not toward anyone yet, just in general.

So there’s the list. We’re sitting here, still awaiting. Except there are twin teenage boys sitting here now eating McDonald’s for lunch, which is making it infinitely more difficult to sit here. =(

I’ll be sure to update when I’m done seeing Dr. R.

* posted on the fly w/o the use of proper editing tools 😉 *

~ Lizzeann

Casey rocks!

Just saw Casey for the first time at Dr. C’s office; she rocks!

She’s super nice and understanding. She didn’t look at me as if I’m a drug seeker, which I get a lot because of the extreme recurring migraines and Fibromyalgia. She actually sat with me and took the time to talk to me. I didn’t feel rushed or like I was just a number. I just love it when that happens and things work out. =)

She and Dr. C left me on the Depakote because it’s diminishing the number of headaches I’m having, even if they are getting worse. Plus, they are making me gain weight! But I’ve already chewed all the flavor out of that one. 😉 He increased my pain medications for when I have a migraine because the dose I was on just wasn’t cutting it at all.

Overall, it was a great appointment. All that’s left today is my appointment this afternoon with my gastro.

Be back soon! =)

* posted on the fly w/o the use of proper editing tools 😉 *

~ Lizzeann

Round 2!

I’m sitting in my exam room @ Dr. C’s office, my neurologist, waiting for his Physician’s Assistant, Casey. I feel like a bloated cow because of the Depakote he put me on to try and prevent my migraines! I gained 9lbs!!! That may not seem like a lot to some people but it’s a lot to me. =( I doubt they’ll take me off of it for that reason though.

After this I have an appointment with my gastroenterologist this afternoon and then I’m done! Well, I think I’m done, for the week at least.

I still have gobs of post to write in order to update y’all on everything but they’ll have to wait because I keep falling asleep while I try and write this. (Yeah, no narcolepsy here. *insert eyeroll* (lol)

* posted on the fly w/o the use of proper editing tools 😉 *

~ Lizzeann

Almost there!

I am done with 3/4 of today’s appointments! Yippee! =)

Now I’m going to rest before I take Elliott Richard to #4 and I’ll update about the day later.

* posted on the fly w/o the use of proper editing tools 😉 *

~ Lizzeann

And away we go!

Of course, on my totally booked solid day I wake up at 3am unable to sleep. After I did some laundry and grabbed a snack I finally fall back to sleep only to have Mr. Emmett John wake up at 4am and refuse to go back to sleep. It’s now 6am and I’m going back to sleep for a few hours. Emmett John still refuses to sleep.

Please pray that he isn’t a complete and total Grumpy Gus from lack of sleep and having his scheule thrown off.

* posted on the fly w/o the use of proper editing tools 😉 *

~ Lizzeann

We’re in!

We’re hanging with the Assistant. She’s checking his eyesight. Eyesight in the right eye – the one with the corneal abrasion – seems much worse to me but I’m not the professional, obviously. Now we are waiting for Dr. Ro.

If y’all could say a prayer it’s not something super serious on top of the corneal abrasion. I’d really appreciate it.

Dr. Ro just got here! Stay tuned!

* posted on the fly w/o the use of proper editing tools 😉 *

~ Lizzeann